Lewis Jeynes

October 2010

2010-10-13T10:33:00.003+01:00

On 3rd October I was lifting Lewis off my bed and he's alot heavier and taller just recently and I misjudged my lifting and slipped forward a little and Lewis' leg got twisted underneath him. He cried alot, so I took him to A&E to get it checked out, he had an x-ray and it was clear - bad sprain, plenty of rest and paracetamol and it will be fine in a few weeks.

So although I didnt send Lewis to school the following week, he did have normal life at home, normal activities, gentle physio, putting his shoes on, lifting, moving, etc.

Then on Monday 11th October I got a letter from A&E asking us to go back as they had reviewed Lewis' x-ray and would like to see him again. So on Tuesday Granny and I took him back to hospital for another x-ray. Well it turns out Lewis did have a fracture on the original x-ray but it was very difficult to see (hairline). He had another x-ray yesterday and there is now a very distinct fracture and so Lewis has a plaster cast on his leg from his toes to the top of his thigh on his right leg.

We have to go back in one week for a further x-ray to see if the break will heal on its own or if it might need manipulation of surgery.

Lewis will be in plaster for around 6 weeks at least, and we are waiting for risk assessments to be done to decide if he can return to school with his plaster on or if he will be safer at home.

Our concern is that Lewis may need bone density testing as we are worried that such a gentle twist has actually broken his tibia so we will be talking to the doctors about that next week.

Sorry it's been so long!

2010-09-07T15:39:00.004+01:00

Hello everybody and sorry it's been so long since I last updated Lewis' website! It's been a very busy 6 weeks school holidays! Lewis went to Blackpool with Daddy and Granny and Grandad and his cousins Katy and Emily. He's enjoyed spending lots of time outdoors and has been growing well too ... very tall young man and very heavy for us to lift!

Lewis is back at school now and loving seeing all his school friends again!

Local newspaper

2010-07-06T13:49:00.001+01:00

Lewis and Mummy and Tina will be in the Doncaster Star tomorrow (Wednesday 7th July 2010) so please do buy it if you can and look out for us!

Hello from Lewis

2010-06-29T15:16:00.000+01:00

Just a quick hello and a quick update. Lewis remains on his antibiotics and so far (fingers crossed) his head control has continued to improve and he is well and enjoying the sunshine-ey weather. Lewis continues to enjoy school although he is looking forward to the school holidays as he will be going to Blackpool with Daddy and Granny and Grandad!

Lewis recently spent a very special weekend with Daddy, as his aunty and cousins were visiting from Australia so it was a big Jeynes family get together which Lewis loved!

Please do continue to follow Lewis on Postpals and on Facebook (search for Lewis Jeynes).

Thank you!

Starting again!

2010-04-23T10:55:00.001+01:00

Just a quick message to let you all know that today we have re-started Lewis on his therapeutic antibiotic treatment so we hope to see similar improvements to last year but this time without the increased seizures please!

In hospital again :(

2010-04-08T14:22:00.004+01:00

Lewis is in hospital again as he is having new movements which are not seizure related but are distressing for Lewis and are exhausting him. He also has a rash which comes and goes which again is distressing him. Doctors are, as usual, clueless as to what could be the problem so at the moment Lew is being observed but we are hoping to get an appointment to see Lewis' infectious diseases consultant soon to see if she has any suggestions for what could be the problem. Very frustrating for us and Lew, but we will not accept that this is 'just one of those thing you have to learn to live with'. We want and need answers!!!

Special Effect Charity and Lewis

2010-03-28T15:52:00.002+01:00

Please take a moment to watch this video clip about the Special Effect Charity and the amazing eye computer they are able to loan out to children like Lewis who can only communicate and interract with their eye movements.

Special Effect http://www.specialeffect.org.uk/ is always striving to raise awareness and of course funds to continue their great work. In July 2010, me and my friend Tina are running in the ASICS British 10k London Run for the Special Effect Charity Team to help to raise more funds for the charity ... I will be posting a link to Just Giving when it is set up, so please please please do sponsor us and please do take a look at the Special Effect website via the link above to find out more about what they do!

Thanks!

Tooth Fairy

2010-03-26T09:58:00.002Z

Just a quick update to let you all know that Lewis lost his bottom two front teeth yesterday! His top two front are wobbly so his smile will just as gorgeous but very gummy soon! :)

Lewis' 6th Birthday!

2010-03-01T14:06:00.008Z

For his 6th Birthday, Lewis had a Science Boffins Party and it was GREAT fun!

January update

2010-01-17T15:50:00.003Z

The Lewis Jeynes Fund would like to say a big thank you to SOLACE and Katherine Kerswell, who is President this year, for supporting the Fund at their Annual Dinner which will take place on 3^rd February this year. It is always nice to know that people are reading about our work and taking in some of the troubles Lewis and his friends go through. Don’t forget to look at Lewis’s Facebook Fan Page for daily updates. With the funds we have raised lately we have been able to donate £300.00 to Lewis' school - Heatherwood School for children with special needs. This was a donation in memory of Madison Delaney a school classmate of Lewis’s who got her angel wings just before her 5th birthday in November. We have also purchased a sensory projector for Cameron Key from Stoke. Cameron has severe epilepsy.

If you are a new visitor to this website please do read the archived links to find out more about Lewis our very brave and gorgeous son and those he has helped through raising money through The Lewis Jeynes Fund.

For those of you who dont know already, Lewis was ambulanced into hospital this week with increased seizures. While at the hospital he had to be given strong medications to control his seizures and as a result of this he did stop breathing which was very very scary. The hospital staff at Doncaster Royal Infirmary (Ward 31) were fantastic and responded super fast to make sure that Lewis was okay. It was a terrifying time and we hope he doesnt do it again! Lewis is fine now and back at home.

Snow Day!

2010-01-05T13:54:00.001Z

No school today for Lewis so we wrapped up warm and went out to build a snowman!!!

Post Christmas update

2009-12-29T11:50:00.002Z

Lewis has been ill since arriving home from hospital on Christmas Eve, with a stomach bug causing sickness, etc. He has not been able to keep his milk down so has been on fluid replacement and water for the past few days with as much milk as we can manage to squeeze into him without it causing further sickness. He's very weak and not himself at all and his head holding and speech attempts are zero. It's very sad but we are at the moment definitely putting it down to weakness, although the suspension of his antibiotics due to his massively increased seizures cannot have helped at all. Its a very frustrating time .. I think Lewis needs a long holiday in a hot country - this cold weather is no good for him at all :(

Lewis in hospital again

2009-12-23T16:57:00.002Z

Hello everybody, its almost Christmas ... Santa is preparing for his long journey around the world tomorrow ... and we are just hoping that Lewis will be at home for Santa's visit and not in hospital which is where he is now due to his horrid horrid seizures.

Please please please spare a thought (and a prayer if you can) for Lewis and all the children who will be spending Christmas in hospital this year or who will be ill on Christmas Day.

And please dont forget to visit www.postpals.co.uk. Today Lewis received a Christmas card from JAPAN ... how cool is that?!

Thanks to everybody, again, for all your support and kindness.

December already!

2009-12-12T09:12:00.006Z

Lewis is back home and alot better although still not 100%. He is off his 2nd antibiotic as we are concerned this may have caused the increased and uncontrollable seizures, we will introduce it slowly in a week or so and see what happens. The sad thing is that the new antibiotic seemed to be having a big effect on Lewis' abilities so hopefully we can find some way around any problems that arise so that Lew can continue to improve without having the horrid seizures which put him in hospital several times in the past month.

On Thursday Lewis was a duck in his school nativity. Lewis clearly enjoyed the experience greatly and it was wonderful for us to be able to go and see him and his school friends in the play.

You can see by the photos that Lewis was loving it!

Lewis back in the classroom after his nativity, giving Mummy a huge smile!

Lewis is receiving lots of cards and gifts in the post already from his massive worldwide fan club - all of this brought about by an amazing charity called Postpals (www.postpals.co.uk) so if you havent already signed up for a pal at Postpals, please do visit the website, find a child you'd like to become a pal for and get writing!

Lewis loves receiving post and always has huge grin when he sees letters and cards arriving with his name on!

Lewis is very excited about Father Christmas coming on December 24th. We have been lucky enough to meet Father Christmas several times already this month already and each time Lew has been mesmerised and listened very intently to what Father Christmas has had to say!

Lewis has promised to continue to be very good and to do his best as always.

Lewis even got a magical message from Father Christmas, all the way from The North Pole which you can watch by clicking here!

Here is Lewis with his Aunty Lucy and his cousins Katie and Emily.

With 2009 almost behind us, we'd like to take this opportunity to thank everybody who has been part of Lewis' life this year, it has been an amazing year with huge ups and downs. Without the support and interest of Lewis' huge network of family, friends and fans (Lewis even has his very own Facebook page!) we would not be where we are now with Lewis on antibiotics which are helping him to improve, even if its just in a small way at the moment. So thank you everybody and let us dare to hope for amazing things for Lewis in 2010 (and for England in the World Cup too!).

Lewis in hospital again

2009-12-04T12:12:00.002Z

Lewis is back in DRI with greatly increased seizures which are not being controlled by his rescue medication. He is now being tried on phenytoin to break the cycle which we hope will work so we can get back home where all the Christmas lights and decorations are up, but which Lewis hasnt seen yet.

Lewis in hospital

2009-11-13T17:59:00.003Z

Due to massively increased seizures, Lewis is now in hospital again. Since Monday evening he has been in a seizure cycle with seizures varying from 30 seconds to 3.5 minutes, and recurring every 5-12 minutes. As he has seizures only when he's asleep, as soon as he has settled into sleep, the seizure cycle has started so he's exhausted!!!

Last night he was started on a new drug (chlobazam) for a 3-day trial to see if it can break the cycle. Last night he had 39 seizures with a 2 hour break. This afternoon he fell asleep at 1.45pm and had a seizure at 2pm but has then slept from 2pm until 5pm when I left the hospital as his Daddy has taken over for the weekend. Let's hope this new drug will break the cycle so Lew (and us!) can get some sleep again!

Lewis was, as ever, immensely brave when having his canula inserted! And his flirting skills have not depleted at all ... he was wowing the nurses as usual with his long eyelashes and his gorgeous smile!!!

He will be in hospital for a few more days while they resolve the seizure cycle and discover if the new drug will work for Lew so fingers crossed he'll be home early next week.

Thank you to Postpals for Lew's letters and cards this week :)

Thank you

2009-10-23T16:20:00.001+01:00

A huge thank you to Blankies for Babes for Lewis' lovely blanket which he received in the post today. We will be taking some photos and posting them soon : )

http://jaxsonsblankiesforbabes.blogspot.com/

Update

2009-10-22T09:05:00.002+01:00

Hello, its been a little while since we updated because there hasnt been much to say! Lewis has been (fingers crossed) doing well with just a couple of seizure clusters that needed treating in hospital, but otherwise he's been happy and well and enjoying life as much as he can!

Thank you to all the Postpals posties who have sent Lew cards and letters and postcards and gifts the past few weeks! He loves to receive mail with his name on!

If you havent already, please do join Lewis' fanpage on Facebook - http://www.facebook.com/pages/Lewis-Jeynes/

And dont forget to get your tickets for his fundraiser at the end of this month!

Update

2009-09-24T13:58:00.002+01:00

Today we saw Lewis' neurologist for an update.

There is a meeting of neurologists tonight at which they will discuss Lewis's MRI scans and then let us know the results. The doctors are still trying to decide if the changes in Lewis's cerebellum are an infection which has been and gone or one that is still progressing. The neurologist mentioned that they would have expected to have seen degeneration in his brain because of his 'degenerative neurological condition' (which we found very upsetting as we've never considered this) but we still hope this is a post infection stage and that the changes/damage will stop or has stopped.

A further EEG, new nerve conduction tests and a gag reflex review are being arranged. Its upsetting to think that Doctor's expect Lewis to degenerate further and are not surprised when he does, we still hope we can find something to halt that process and start the road to recovery. Nothing will stop us looking for the answers, Lewis is too brave and gorgeous and deserves to find the cure he needs.

It was also very upsetting for the doctor to say they would do a further MRI in 2 years. All I can see is Lewis' life stretching ahead of him like this, with no hope and no cure. To us 2 years is a lifetime - anything could happen in that time and we've been so hopeful with Lewis' response to antibiotics with his improved head control and cognitive abilities and now with the changes to his MRI we feel like we are taking a huge step back to square one where we know nothing and anything could happen - so it was a very tearful appointment.

We love you Lewis x x x

Walk4Matt 2010 and Hugo Mouse

2009-09-19T09:59:00.005+01:00

Lewis has had a good few days and has been super smiley and happy. He's spent some time on his eye computer at home which he loves and I really would encourage you to sponsor this fundraising event to help raise money for the charity that loans Lewis' his eye computer. The computer costs around £20,000 to buy so being able to borrow one is really a massive advantage for children like Lew .. so please do sponsor http://www.walk4matt.org/ and help to raise money for this very worthy cause!

Also, another website we would urge you to visit. Sarah Kidd approached us a little while ago asking if Lewis would like a Hugo Mouse and book. Hugo is a handmade soft toy mouse with his very own embroidered 'special words'. He also has his very own hospital identity bracelet so that he doesnt get lost! The idea of Hugo is to go with a poorly child to the doctors / hospital / everywhere really! to keep the child company and to make the experience less harrowing. Hugo comes complete with a little book of photos of the child with family members and friends so the child can have some familiar faces to look at and also doctors and nurses can interract with the child and Hugo by looking at the book. Lewis loves his Hugo and his little book and Hugo does go pretty much everywhere with Lew. You can find out more about Hugo (and see some photos of Lew!) on Hugo's website http://www.wix.com/hugoshope/Hugo.

A very worthy cause - please sponsor!

2009-09-11T12:43:00.003+01:00

As you all will know, Lewis has (on loan) a MyTobii eye computer which he is able to play games on and one day (we hope!) will one day be able to use to communicate with! He uses one at school, so having one at home to use as well is absolutely brilliant for Lew and for us! Well the charity that has let us borrow the computer is called Special Effect and Matt Hampson is doing some fundraising for them so that they continue the amazing work they are doing so please please visit this website and sponsor Matt! http://www.walk4matt.org/ It really is a great cause!

With regard to Lewis - he is doing so well on his antibiotic treatment and we have been so very very positive about him actually making a recovery! However, we have been told that after his recent MRI scan there are changes to his brain. We are seeing Lewis' neurologist on 24th September to discuss these results in detail, but for us its a very harrowing time as we feel like we are back at square one - we could lose Lewis. We have always focussed on the fact that he has no damage or changes to his brain and that as long as this is the case, there is always the possibility of a full recovery at some point in the future. Now we are, basically, scared that Lew could begin to deteriorate again. We will, of course, let you know the results of our meeting with Lewis' neurologist later this month. Let us hope and pray that it will be something we do not have to worry about. We love you Lewis, so much x x x

Some amazing photos of Lew

2009-09-04T08:53:00.004+01:00

Sorry its been a while since an update on here. We have been keeping Lewis' facebook fan page up to date as its so much quicker and easier than on here but we really did want to share these amazing photos with everybody who cannot access facebook.

Lewis' head control has improved amazingly since he began on antibiotics around 8 weeks ago. This week I have been practicing Lew's sitting up ability and here are some photos of how well he's doing! Please bear in mind that before he started on the antibiotics, in this position his head would have either fallen backwards with no neck/head control at all, or fallen forward on to his chest. He would not have been able to hold his head up like this at all, and certainly not been able to turn it to the side to look in the mirror on his wardrobe!! Amazing!

A glimmer of hope?

2009-06-18T18:30:00.000+01:00

Today we have had a few positives, we managed to find out that we can be fast tracked to see the specialist on infectious diseases so we have organised that with our GP, we have seen Lewis’s Doctor in Doncaster who admits its not his specialist field but he will try to support whatever we need to do to help Lewis. As a result of the GP referral we should get a much earlier appointment for Lewis to be seen by the regional expert. If we manage to get to that appointment soon we will be able to assess how soon treatment for Lewis can start, whether that be through the NHS or through a private route. We have our fingers crossed that we can continue on with the NHS but it may be that we have to look at a combination of the two managing Lewis’s treatment and other medical issues. Lewis’s granddad is trying to make an appointment to see an American specialist while he is the USA visiting his brother (get well soon Great Uncle George) and it may be that we decide that the best option for Lewis to aid his recovery is eventually for us to travel to one of the better known clinics over there for examination and possible new treatment regimes.

All in all at the moment we are feeling a bit more positive than yesterday when we heard that the appointment would be months away ...

Lewis himself is very bright and energetic with his new feeding schedule and he is putting on weight which is really good news, with the possibility of treatment and maybe recovery ahead he needs every calorie he can get.

Thank you to all those who are keeping up with Lewis’s website, the emails are really helpful, sorry we can’t always reply as you can imagine we are pretty overwhelmed by the possibility that we can help Lewis recover and that is taking up alot of our time!

So angry

2009-06-17T14:46:00.000+01:00

Lewis dad has finally been able to get through to the Infectious Disease doctor at Sheffield. They have lost Lewis' referral letter but have an appointment in for him for 9th September ... that is two and half months away. We need to start Lewis' treatment ASAP, especially as he is always healthier in the summer and of course because the further away we get from his initial infection with Lyme Disease (September 2005), the less recovery we can expect. The appointment on 9th September will be to talk to the doctor, to discuss IF Lewis even has Lyme Disease according to their archaic out-dated tests and if he does, what they can offer and when, bearing in mind Lewis will have to have surgery (for a port-a-cath or hickman line) which will mean more waiting. There is NO WAY we are waiting until next year for this treatment - he needs it now.

Some photos

2009-06-15T19:59:00.002+01:00

Here are some photos from Lewis' recent visit to White Post Farm with Daddy and with Granny in the hydro pool at Daddy's house.

Lewis is now on Facebook!

2009-06-14T11:03:00.003+01:00

Lewis now has a fan page on Facebook which will be updated daily with brief news of what Lewis is up to for each day. Once Lewis' Lyme treatment starts, we will be updating both his Facebook page and this website regularly with how he is doing and what is happening from day today. So if you are a Facebook regular, please do become a fan of Lewis' page by searching for Lewis Jeynes.

2009-06-04T12:51:00.005+01:00

Lewis is in the Doncaster Freepress today and was on Calendar news last night. You can see the Calendar story on YouTube. Its not a very good video as I had to record it off the TV with my camera! So you will need the sound up! There are two videos - the short introductory one and then the longer full story. As ever, Lewis loved the huge camera! http://www.youtube.com/watch?v=cVtvSz2qxk0 is the short version http://www.youtube.com/watch?v=Pp23kNkfGgE is the full version

Lewis TV and newspaper

2009-06-02T14:44:00.002+01:00

Hello everybody. Lewis will be on Calendar (ITV Yorkshire) either this evening at 6pm or tomorrow evening at 6pm. Lewis will be in Doncaster Freepress on Thursday 11th June. Please do look out for him!

Lewis update

2009-06-01T21:34:00.002+01:00

Just to let you know, Lewis will probably be in Doncaster Freepress (http://www.doncasterfreepress.co.uk/) and on Calendar (ITV local news channel) this week because of his Lyme Disease diagnosis.

Update

2009-05-28T14:36:00.002+01:00

Lewis is alot better today after having a bit of sickness and a high temperature. We have also spoken to Lewis' paediatrician about antibiotic therapy and specialist physio as well as the specialist doctor who did Lewis' Lyme Disease testing. The specialist doctor has said: The tests indicate a chronic immunosuppressive situation associated with Lyme disease and Dr Schwarzbach recommends Chlamydia pneumonia testing, plus antinuclear antibody titre. The latter I think you have already had performed. So we'll let you know tomorrow if we hear any more!

Update

2009-05-27T23:44:00.004+01:00

We are still waiting to hear from Lewis' paediatrician about when he can start the antibiotics. We hope to get something sorted very soon. Obviously every day we are waiting is a day too long. Lew has been ill for long enough and its very important to us that we get him on the road to recovery as soon as possible. Of course there are worries. My main worry is that Lewis has contracted Lyme Disease since he got ill and that he still has his underlying mystery illness, and that the Lyme is something extra on top. I am hoping with all my heart that this is not the case, and that Lewis' condition was caused by Lyme and that it can be reversed with the antibiotics and the intensive physio. We have also read that Lyme responds well to alternative therapies such as accupuncture, so we will look into this as well as time goes by. Thank you to everybody for your lovely messages. We are very excited, very hopeful, but also very scared!

UPDATE

2009-05-26T15:13:00.001+01:00

Lewis' dad has spoken to the doctors. Lewis definitely does have chronic Lyme Disease. He should be started immediately on a course of IV antibiotics (this could be 2-3 years treatment) which will involve a drip for around 2 hours a day so he will have to have a port-a-cath fitted. As he starts to improve (we hope!) he will need rehabilitative physiotherapy. Its all VERY exciting!

Test results

2009-05-23T14:26:00.003+01:00

We have today had the test results back from the lab in Germany for Lewis. We will know more once we speak to the doctors on Tuesday (darn Bank Holiday weekend!) but here is what the results say: Lewis' CD57 cell count is indicative of a chronic immune suppressed situation caused by borrelia burgdorferi. We will let you know once we have spoken to the doctors on Tuesday what the next actions will be.

Update

2009-05-06T13:09:00.009+01:00

Here is Lewis with a batch of post from Postpals! He loves receiving his Postpals mail!! Here is Lew at the park with Ethan. Here is Lew asleep on the garden swing after a busy day learning how to read with Mummy! Here is Lew with his Postpals post again! An Easter card from Postpals ... Another Easter card from Postpals! A lovely Easter card from our friends Angela, Len, Jenna, Ashley and Hannah in Wales! A very cute Easter card from Postpals! Some VERY cute eggs from Postpals - thank you! At the park with Mummy. Lewis picked a flower for me on his way up the drive from the school bus! Lewis and Rachel. Lewis and Samuel and the light up balloon! Lewis and me at the park in very sunny Twickenham! Lewis in Nanny's garden in Twickenham.

Some photos

2009-04-12T21:43:00.006+01:00

Lewis in hospital this weekend - even though he felt rough, he still managed to smile at Upsidaisy! The part of Lewis being in hospital that he actually enjoys - he gets to watch TV all day! Lewis and mummy waiting to see the doctor on Thursday.This photo was taken just before Lewis started feeling poorly (the clock and date were wrong on the camera!). Lewis is out of hospital now and recovering at Daddy's house. He's on oral antibiotics for 10 days and should be back to normal very soon. Thank you very much to all the staff at DRI Childrens Hospital Ward 31 for taking care of Lew and thank you to everybody for your kind messages and wishes for Lew's speedy recovery.

Lewis in hospital

2009-04-09T21:24:00.003+01:00

Just a quick update. Lewis hasnt been well since Sunday evening really, and today he seemed alot worse so I took him up to the assessment unit at the hospital to be checked out and they have decided to keep him in for observations. He's had a chest xray which was hazy so possible infection. He's had blood tests so we are waiting for the results of them. He seemed a bit brighter when he discovered he was surrounded by attractive young nurses though! He's staying in overnight with his daddy and I'll let you know tomorrow if he's going to be allowed home. UPDATE: Lewis started on IV antibiotics overnight as his infection markers in the bloods were high. UPDATE Sunday 12th April - Lewis was much better this morning and will be switching from IV to oral antibiotics this evening and should be okay to come home!

Not well

2009-04-08T12:35:00.002+01:00

Lewis isnt very well at the moment - he's got a bug/virus and is not happy or smiley and is sleeping alot. He's getting plenty of rest and quiet - getting bored of my voice reading him stories I think! Hopefully we can get him well very soon, so we can get out and about these Easter holidays for more photos for his website!

Some new photos of scrumptious Lew!

2009-04-05T09:34:00.002+01:00

The peacock on full display! Lewis and I went to the farm again on Wednesday. We had a lovely time, the weather was beautiful and there were new lambs to see so that was really lovely! Unfortunately the camera battery ran out so we couldnt take many photos! Trying to feed Lewis to the sheep again! Here is a lovely photo of Lewis ready for bed ... but very wide awake!!!

Farm today

2009-03-25T17:33:00.004Z

Today me and Lewis went to Wentworth Family Farm near Rotherham. It was a lovely bright sunny day although a bit cold ... so we were surprised when out of nowhere it started pouring with rain! It made us laugh as we had to hide in the barn with the turkeys and the rabbits! Lewis got alot of attention - the goats hoped to get some food from him!

Here we are in the barn with the turkeys! The male turkey was making alot of noise which made me jump and made Lewis laugh!

This goat was VERY friendly and Lewis loved to get really close up to him!

These little goats were so cute and tiny and had tiny little bleats!

In the food bucket is a little tiny kid! Awww!

Lewis' loaned MyTobii

2009-03-11T18:29:00.005Z

Lewis has been spending alot of time on his loaned MyTobii at home. Thank you to Mick and Bill at Special Effect (www.specialeffect.org.uk) Lewis has on loan an amazing piece of technology! An eye pointing computer which he is learning to use both at home and at school (school purchased a computer for him at school, but we cant afford one yet at home - they are around £20,000!). Lewis loves to play on the games on his home MyTobii.

And we just this week received in the post a whole new bundle of games from Special Effect which Bill put together just for Lew so there is alot of focus on In the Night Garden (Lew's favourite TV programme!) and on photos of his friends and family!

Thanks to Mick and Bill at Special Effect - we love it!

And to all Lewis' friends who visit his website - please do take a look at the Special Effect website. It is a charity and does rely on donations to continue its amazing work into helping children and adults like Lewis.

Lewis update

2009-03-05T15:09:00.004Z

We had a hospital appointment today with Lewis' neurologist. It was a really good meeting and we felt alot was achieved. After feeling so low about the Lyme Disease result, it is great to feel positive about the future for Lew.

First of all, we have confirmed that he will not be having the surgery on his legs - we had originally believed this was surgery to re-align his hip, but we then discovered it would also involve cutting Lewis adductor and abductor (not sure if those are the correct names!) muscles in his thighs - and muscles dont grow back - and given that we dont know what Lewis condition and therefore prognosis is, we cannot risk having surgery like this as one day he may be cured and we want him to be able to walk again.

Secondly, Lewis will be having nerve conduction tests. These have been put off because Lewis used to have reflex anoxic seizures (at extreme fear/upset he would hold his breath reflexively - ie. he was not in control - until he turned blue and passed out). Having the nerve conduction tests would have triggered the RAS and so therefore would have not given any clear results. Now that Lewis has grown out of his RAS, we feel it is the time to have the tests so these will be carried out in the next 2-3 months. The tests involve sending small electric shocks through Lewis' nerves to test the time it takes to get a response - if the nerves are damaged, the response will be slow or non-existent.

In addition, we are hoping to get a meeting soon with a doctor who is involved in adult deep brain stimulation. This treatment has been carried out with huge success on a test group of adults with neurological conditions. A doctor in France is pioneering this treatment on children and we are hoping to be able to meet with this doctor in the near future. Until then, Lewis will be seen by the adult doctor in Sheffield as there is the hope that this treatment will become available for children in the UK very soon.

We also found out today that Sheffield Childrens Hospital is getting a new super brain scanning machine in April and Lewis on the waiting list for one of these specialist scans. It is like an MRI but much more detailed and may pick up something that the regular MRI did not.

So we have alot going on over the next few months.

Thank you to everybody for your very kind messages about the Lyme Disease test results. I did receive text messages from a couple of people but I dont have the numbers stored in my phone so was not aware who they were from - so thank you to those who texted too!

Lewis - Lyme Disease

2009-03-03T17:12:00.001Z

We today had the results back for the tests for Lyme Disease - these came back negative - Lewis does not have Lyme Disease. Thank you to everybody who encouraged us to pursue this - it is better to know than to wonder.

Lewis Birthday photos

2009-02-28T20:18:00.012Z

Lewis had a lovely Birthday party at Daddy's house and then came home to open his cards and presents here - thank you so much to everybody who sent him a card and/or a present. He was very tired after a busy day, but he did love seeing his name on so much mail! Thank you to Helen Brierley (Postpals) for Lewis' seed with his name on it! We shall have fun growing it!

Thank you to Maria and Michael (postpals) for the lovely card and the 'new home card'!

Thank you to Postpal Erin Fs granny and grandad for the lovely card.

Thank you to Evie Macreadie, Aunty Nicola and Uncle Lee for the lovely fishy card! Thank you Michael for the Toy Story DVDs and lovely card!

Thank you to Marie and Sian for the bus card.

Thank you to Kathleen Brewer (postpals) for the lovely card.

Thank you Grandad Skinny for two birthday cards and for the money to buy some DVDs!

Thank you to St Matthews Sunday School (Postpals) for the lovely card.

Thank you so much to Nanny Val and Millie for the lovely space card and the Birthday Boy badge.

Thank you to Sarah for the Birthday letter.

Thank you to Tracy for the lion card with the stickers!

Thank you to Jenny for the brilliant hamster card!

Thank you to Lewis' school friends at Heatherwood and to the lunchtime staff for the lovely cards!

Thank you again to Helen Brierley (Postpals) for the lovely card!

Thank you Leona for the lovely pirate card and stickers!

Thank you to Sian and Jamie (Postpals) for the musical instruments, the £5 and the lovely card! (And for the letters!!)

Thank you to Karen (Postpals) for the Robots DVD and the lovely In The Night Garden card!

This card was from Mummy and Samuel and Tabitha.

Thank you to Grandad Skinny for the DVDs!

Here is Lew with all his cards and presents - thank you everybody!

This is Lew in bed on his birthday - the clock and date are wrong on the camera!!! It was taken around 7.30pm this evening!

HAPPY BIRTHDAY!!

2009-02-28T16:26:00.004Z

Happy 5th Birthday Lewis!!! x x x x x

We hope you like these photos from Lewis' 1st Birthday!

Update

2009-02-20T09:53:00.004Z

Sorry for the delay in getting this update done. We only just got the internet back!!! We went to see Dr Daymond at Nuffield Hospital in Newcastle and Lewis was immensely brave, having his examination and his blood tests. You are a champion Lew!! We now have to wait 3-4 weeks for the results of the blood tests for Lyme Disease - fingers crossed everybody! Also, Dr Daymond has discussed Lewis' condition with his colleagues and we are hoping to see a specialist - Dr Julu who is a Consultant Neurologist at Breakspear Hospital and Royal London Hospital. He the leading specialist in autonomic nerve function and he recommends that he should see Lewis for Cortico-bulbar function to study the Brain stem function and also to have an MRI of this area. Lew was due to have surgery on his hips at the end of March - we have asked for this operation to be postponed as it involved cutting Lewis' muscles in his thigh and of course muscle cannot grow back - so we want to see what happens with the Lyme tests and seeing Dr Julu before we go ahead with the surgery. So things are moving again - lets hope we can get some good news for Lew.

2009 Update

2009-01-29T13:46:00.013Z

It is still January and yet so much has happened already!

In September last year an article appeared in the Daily Mail about Lewis and we had a huge response. Many of you mentioned Lyme Disease but as we had been told Lewis had been tested for this, we did not pursue it further. But some of you did - and we are now looking forward to an appointment next month at the Nuffield Hospital in Newcastle to get Lewis a detailed test for Lyme in the hope that he does indeed have this (from an insect bite he got in Southern France in September 2005) and that with a long term course of strong antiobiotics, he can be cured.

Now we dont know if Lew has it yet, so we cant be too excited, but we are very very hopeful and we are immensely grateful to everyone who continued to tell us to get Lew tested for Lyme, even after we had put it aside as something he had been tested for and therefore didnt have.

This is, we are sure you can imagine, immense news. And we will of course let you know the outcome of our appointment on 9th February. The test results take several weeks to come back but we will let you know how the appointment went anyway and then we can all hope and pray for some good news from the results in a few weeks time.

Lewis has, so far, been incredibly well this winter for which we are truly grateful. Many people have commented on how well he is looking. We are so proud of him and of his big brother Samuel.

Some more good news for us is that Lewis, Samuel and I will be moving very soon to a bungalow - at the moment we are in a house with lots of stairs so this is going to be a great improvement for us. Also, the bungalow is much larger than this house so there will be plenty of room for all of Lewis equipment and we hope to have his sensory bedroom up and running very soon after we move in!

Thank you to everybody for all the lovely Christmas cards and gifts for both Samuel and Lewis. They both had a really lovely time.

We are still awaiting news of a date for Lewis' hip operation, although with the Lyme Disease testing happening soon, we are expecting that to be postponed until we know the results of the tests.

And finally, here are some lovely photographs of Lewis' Christmas. These two photos are from when Lewis visited the Bluebell Wood Childrens Hospice to deliver some gifts from The Lewis Jeynes Fund. We were able to purchase light effect sensory equipment for 3 of the childrens bedrooms at the hospice and we hope they will be enjoyed by all who stay there.

Here is Lewis with his cousins Katy and Emily.

Here is Lewis having a story with Granny.

Lewis received lots of gifts from Postpals - thank you all for the lovely presents for both Samuel and Lewis.

Lewis with Grandad!

Lewis with Daddy, Katy and Emily.

Declan became an angel today

2008-12-15T10:12:00.003Z

Lewis' and Nathan's friend Declan became an angel this morning. Please think of Declan's family who have lost a huge part of their lives. We have loved you since we met you Dec and we will miss your gorgeous face, but you will never be forgotten.

Please, visit http://www.postpals.co.uk/ to make a difference to a terminally ill child.

Hospital Appointment Today

2008-12-10T20:19:00.002Z

Well today we had a routine hospital appointment, didnt expect anything from it, just another doctor to look at Lew and say 'nope nothing we can do, all very good, thanks very much, come back next year'. So I had a bit of a shock. It turns out that Lew has hip dysplasia and is going to need surgery in the next 3-6 months. His right hip is in such a position that if it is not dealt with soon, it will erode at the socket joint and the joint will become useless. So he has to have some surgery on the soft tissue around his hip and then have a brace and plaster for 6-8 weeks to try and sort the problem. We wont know until after the brace and plaster comes off if it has been successful. If it is not then Lewis will have to have surgery to the actual hip joint itself. We will have another appointment in the new year to go over all the details and to arrange a surgery date. Being positive, hopefully the brace and plaster will solve the problem and Lew's hips will be fine.

Bluebell Wood Childrens Hospice

2008-12-03T11:53:00.013Z

At the end of November, Lewis and I spent a few days at Bluebell Wood Childrens Hospice. Lewis hadnt been very well so we decided it would be nice for us both to have a bit of pampering! What made our visit even better was that Debbie, Matthew and Ethan were there at the same time! We had a wonderful time helping out with the christmas decorations, and Debbie and I made a christmassy fireplace to really brighten things up! Thank you to all the staff who made us feel so welcome! We hope you like the photographs of our time at Bluebell Wood!

Surrounded by HUGE cuddly toys!

Having cuddles on a HUGE beanbag with mummy!

Lew loved this rabbit!

Matthew was having a chilling time!

Ethan being babysit by Winnie the Pooh!

Story time!

Debbie getting ready for Santa!

Fun in the ball pool!

Mummy making the christmas fireplace!

Lewis having a chill while Debbie worked on the fireplace!

The atmosphere was great once the tree was lit!

More progress on the fireplace!

Almost finished!

Mattnhew loved relaxing in this super comfy chair!

Putting the finishing touches to the fire!

HOORAY the fireplace is in place!

Debbie and Mummy sit in front of the fire after a hard afternoon's work!

You cant really see, but at the base of the fire are tiny electric tealights so that with the lights off, the fire had a lovely orangey red glow!

At the end of a very busy day, Lew went to bed with his Hoob!

In the morning the children made snowmen!

And then had a go at the sensory station.

November

2008-11-25T08:16:00.015Z

So November is almost over ... and its nearly time to put the Christmas decorations up!!! Just over 4 weeks until the big day! Lewis has been okay until just this last week when his seizures have increased hugely - Lewis normally has one or two seizures every few months, but with autumn and winter taking their toll and the additional bugs spreading around, he's had several a day for the past few days with temperature spikes, clamminess, increased twitching and lots of crying which, if you know Lew, is very unusual, so we know he's feeling rubbish, we just dont know how to make it better aside from lots of love and cuddles and calpol! So we're lucky enough to be able to spend a few nights in the Bluebell Wood Childrens Hospice which is where we are off to this afternoon. Lewis' friend from school, Matthew, is also going to the hospice this afternoon so we'll have some good company over the next few days along with Matthew's mum Debbie and Matthew's scrumptious baby brother Ethan! Lewis loves seeing Matthew and Ethan so it will help to cheer him up!

Thank you so much to Lewis' Postpals (http://www.postpals.co.uk/) for his super Horrid Henry blanket and also to Valerie and family for the postcards and the tiny bead fairy!

Yesterday I went to the Royal Mail to pick up a delivery for Lewis - WOW! Thank you to Katen and everybody at Love Quilts for putting together the fantastic patchwork quilt for Lewis! It is beautiful and Lewis and Samuel spent a long time looking at each of the squares and where they had come from - not only England, Scotland and Ireland but also Spain, Italy, Germany and USA! You can see on the photographs where each piece came from and if anyone is interested in contributing towards a quilt for poorly children like Lew, please do take a look at the Love Quilts website - http://www.lovequiltsuk.com/.

Christmas is Coming - Reindeers and Elves wanted!

2008-11-09T18:54:00.001Z

Post Pals brightens the lives of seriously ill children (most of whom are fighting cancer or going through transplants) and their siblings by featuring them on the website www.postpals.co.uk with their own page, with their story, interests and a forwarding address. Members of the public from around the world can log on and send cards, letters, emails and small gifts to brighten the child's day and let them know someone cares. Post Pals does this all year around but at Christmas they run some special schemes. Reindeers (volunteers) are assigned to a young child and during December they send a card from each of Santa's reindeer, talking about anything from loving it when carrots are left out or how full the sleigh is getting. Its great fun to use your imagination and the children really enjoy it, one boy was so relieved as it meant santa definitely knew he was in hospital at Christmas and another girl thought the reindeer wrote to her as she was good in helping her mum look after her disabled brother. The elf scheme is another project, a little like the Shoe Box appeal we all know. You're assigned a child and you have a read their page to get to know them. Then you gather up gifts to the value of £15 and send them off to the child in December. Post Pals needs to find 240 volunteers for this so please spread the word about how to make a difference this Christmas. A picture of little Aled with his elf box can be seen here http://tinyurl.com/64pq5b and a picture of Nikita with the bear she was sent can be seen here http://tinyurl.com/6mq9rj (sadly she passed away on Christmas Eve, a couple of weeks after this picture was taken). You can also send christmas cards or little gifts to any child, just log onto www.postpals.co.uk click on "News" to find out how to volunteer and see how a simple gesture can make a big difference.About Post Pals;www.postpals.co.uk - Post a Smile on a Sick Child's Face Winner of Queens Award for Voluntary Services 2008Supported by Princes Trust and Children in NeedPatron Fearne CottonPost Pals on the BBC http://news.bbc.co.uk/1/hi/england/southern_counties/3673782.stm

No internet for 3 months! Back now!

2008-11-06T07:44:00.005Z

In July we went to Hayling Island for a holiday. Here is Lewis with Katie, Aime and James! We have had a very busy time these past few months, but not many photographs and no internet! Thank you to everybody who sent us information or kind words after Lewis appeared in the Daily Mail. We have looked into the suggestions and discussed them with Lewis' medical team. Unfortunately we are still in the same position - we dont know what is causing Lewis' condition. But we will continue to search and hopefully one day soon we will have a miracle!

Here is Lewis with Katie, Aime and James again, with the toys they won at the arcade!

Lew enjoyed watching James playing in the arcade.We also went bowling as the weather was very poor! It rained all week!

Here is a very cute photo of Lew!

In August Lew was very poorly. He had suspected pneumonia and a strep infection. He spent a week in hospital and recovered well.

Now we have the internet back, I will take lots of photographs and update more regularly.

We are getting ready for Christmas ... only 7 weeks to go!!

Lewis update

2008-09-02T08:06:00.005+01:00

It has been a while since the last post, its been very busy. So just a quick update to let you know Lewis is doing really well now after coming out of hospital on Saturday. Lewis had suspected pneumonia and then a possible strep throat infection and so has been on antibiotics for quite some time, first by IV and now orally (well through his tube!) at home. Lew is brighter than we have seen him for a long time. Lots of smiles and laughs! I will try to get some photographs on soon. And dont forget to buy the DAILY MAIL today (Tuesday 2nd September) and look for an article about Lew in the Health Pages or at Daily Mail online at http://www.dailymail.co.uk/health/article-1051552/How-cruel-disease-paralysing-little-boy--knows-kill-him.html Thank you to everyone for your emails, texts and phone calls checking on Lewis. ************************************************************************************** UPDATE 4th September 2008 Thank you to everybody for your emails, comments on Lewis' website and also in his guestbook. We will be replying to everybody soon and will be checking out all your suggestions with Lewis' neurologist. Lewis' story in the Daily Mail has spread as far as the US on the Fox News website - http://www.foxnews.com/story/0,2933,415801,00.html so thank you very much indeed to all the Fox News website readers who have contacted us too. We will be in touch. We also did a radio interview yesterday with BBC Radio Sheffield. You can hear the interview online at http://www.bbc.co.uk/southyorkshire/content/articles/2007/05/08/radio_sheffield_click_of_the_day.shtml and click on Wednesday. Lewis is feeling much better after his recent hospital stay. I will get some photographs up on the website very soon.

Our June holiday!

2008-07-02T17:22:00.013+01:00

Lewis and I had a lovely little holiday down in the South of England for just over a week in June. We got to catch up with lots of our friends, and we had a really great time! The photos are all a bit mixed up though! Above is Lewis with Nathan (www.caringbridge.org/visit/nathanbovell). We met up with Nathan and his (gorgeous) mum Anna towards the end of our holiday. We thought the boys looked cool in their matching chairs! Lew is making eyes at Anna while Nathan sleeps. I havent put a photo of Anna on because she's just too good looking - Lew was mesmerised! On the way home on the last day of our holiday, we visited Caz and Declan in Luton (www.caringbridge.org/visit/declankelly). Caz made me the most scrumptious lunch (again!), and surprised me with the most awesome birthday gift (yes it was my 39th birthday on Saturday). Here is Lew making eyes at Caz, ANOTHER blonde lady! He has cream on his face as he got sand burn and it made his face sore. Its all fine now! Here is a gorgeous photo of Declan with his big bro Kyle and mad mummy Caz who is my best friend in the universe!

On the Monday of our holiday we drove down to West Sussex to stay at Butlins (hmmm no comment, we didnt like it). As we had a good drive down, we went across to Pagham to visit Aunty Nicola, Uncle Lee and Evie who were staying there in a caravan. We used to go there every year when we were children, so it was so cool to visit the old haunts, like this ancient church. In the caravan, Evie was let loose with the camera and took some fab pics ... above and below! While we were at Butlins (Bognor) we met up with postpals posties Niki, Kevin and Noah. We have been chatting with Niki for a while now so it was really special to finally meet up properly! And Noah is scrumptious and Lew adored him! Here is Lew with his Iggle Piggle which Niki, Kev and Noah gave him as a gift - THANK YOU! We miss you and hope you are having a great time in the US and that we can see you again soon! Niki lives in Brighton so we had a wonderful day there! Below is scrumptious Noah! See how mixed up these pics are! These photos are back at Pagham on the Monday!

On our way down to Bognor, we spent a wonderful weekend with my old school friend Mary and her 3 wonderful children. Below is Mary and my dad (Grandad Skinny) preparing the bbq food! It was delicious!

Here is Aime, and her brother James. Here is James again! Lewis ADORED James! Here is Lewis with his mad mum (me!). On the Sunday, we went to Bushy Park (near Hampton Court Palace) and played in the sandpit. It was great for Lew to experience this, and he loved watching the children playing too. Unfortunately though it was very windy and this is where he got his sand blasted face!

Below is Katie, Mary's eldest daughter. Here is Aime collecting sand! On the walk back home we had ice creams, yummm!

Here is Lewis with me and Mary. We really had a wonderful weekend and cant wait to go back down to see them again! Here is Lewis with me and Grandad Skinny! Mary and Lew (below) chilling out! Below, Lew is getting his legs buried in the sand!

Back in Mary's garden, James played BOO with Lewis and a jumper! Lew loved it!

It was great to learn that Mary and the children are great CHELSEA fans!!! Below ... we arrived at Mary's quite late on the Friday evening and the children were all in bed. Lew went straight to bed too. So in the morning, he was very excited to be woken up by Katie and Kitkat!

Grandad Skinny lives very close to Mary, so we went round to visit with him and his cat! We had a wonderful holiday, Lewis loved seeing everybody and getting lots of attention!

Super amazing Lewis!

2008-06-16T15:50:00.004+01:00

Well, what an exciting afternoon we have had! We were invited into Lewis' school this afternoon to watch Lew trialling a fantastic new computer! This computer is amazing! And Lewis is amazing too! The computer takes a picture of Lewis' eye and once it has that, it uses Lewis' eye movements to control what happens on the screen. Its hard to explain how amazing this is! Just imagine you cant move, you cant speak, you cant do anything but you understand everything. That is how Lewis is. And today, with this computer, he was able to do so much!!! He will have to learn how to use the computer effectively, but the school are already really pleased with how far he has come on in the past 3 weeks of the trial. So they have ordered the computer for Lewis to use at school on a regular basis! In time, Lewis will be able to use the computer as a communication aid. For now, he will be able to use it to make choices, to play educational games, and to learn. As he learns, he will be able to use the computer to speak! My job now is to take lots and lots of photographs around the house and outside, and of people who are important in Lewis' life, and of course photographs of our cats!!! These can be loaded onto the computer for Lewis to use. To fully appreciate the amazing opportunities available from this system, we would ideally like to be able to purchase the system for Lewis to use at home. The approximate cost of the system is £12,000. Its alot of money, but it is worth it - it will give Lewis a voice and the ability to learn and communicate and to enjoy by doing things himself! This computer will be like a key for Lewis - a key that is opening a door to a much more rewarding and fulfilling life! So we will be doing lots of fundraising to get together the money to buy Lewis this system for home. So please, if you can, come along to one of The Lewis Jeynes Fund events to help us reach our target! Here is more information about the system - http://www.smartboxat.com/mytobii.html

Hot June!

2008-06-08T17:50:00.007+01:00

Here is Samuel doing his art homework - a view from a window. He is very good at drawing! Doesnt get it from his mother! Here is Lewis asleep on his swing in the garden - along with Upsy Daisy and Makka Pakka!!! Look! On the lake at the moment its like a kindergarten! Lots of baby ducks and awww the cygnets!! Today Lewis went in the pool with Daddy. It was lovely to cool down on such a hot day!

Grandad came over to lunch and to play. Granny is on a yoga holiday in Majorca so she didnt make it!

Finished in the pool, and back in the shade chilling, lovely! As you can see, I didnt keep out of the sun today!

Lewis loves has his photo taken - can you tell?! ************************************************************************************

Please leave a message for Declan Kelly, Lewis' buddy, who is not very well at the moment - http://www.caringbridge.org/visit/declankelly

Cameron's 5th Birthday Party!

2008-06-01T16:26:00.007+01:00

Thank you very much indeed to Jayne and Phill for inviting us to Cameron's 5th Birthday Party! We had a lovely time, it was great to meet Cameron's family and friends, and to have a mad time in the ball pool! We hope you enjoy the photographs!

Granny and Grandad are home!

2008-05-23T18:26:00.007+01:00

ABOVE: Lewis, Cameron and Matthew chilling on the garden swing. Well after 6 weeks on holiday, Granny and Grandad came home .. hooray! It was so lovely to see them after all that time and Lewis was very excited to see them, after receiving lots and lots of postcards from them from all over the World! So, the weekend after Granny and Grandad came home, we had a sort of bbq, but without the bbq! Kind of a garden picnic party thing! And we had a great day! Phill and Jayne were able to get across from Stoke for the day with their children Tiffany and Cameron. Cameron has severe epilepsy and other problems and so he is unable to move, but even so he's a gorgeous scrumptious little man with incredible blue eyes whom everybody adored! Debbie and Robert also came over with Matthew and Ethan. Matthew also has severe epilepsy and like Cameron he has no movement, but again he's a super flirt with the most gorgeous blue eyes and everybody loved him too! Kirsty, Alastair, Kath and Ian all came too. James was on a football weekend in Newcastle and we got texts from him about how much he'd had to drink!

ABOVE: Lewis and Cam on the swing. The white fluffy bear was a present for Lewis from Cam. It has fibre optic lights inside and changes colour, very cool! ABOVE: Jayne and Cameron.

ABOVE: the three boys chilling again!

It was sooooo hot that we all came inside and we had to bring the air conditioning unit from upstairs to keep the front room cool! It was the most popular place to be until the sun cooled down a bit later in the afternoon!

ABOVE: Lew chilling in the aircon with Granny and Grandad!ABOVE: Lew in the pool with Kirsty and Kath

It cooled down enough for us to go in the pool without being cooked! It was a really lovely day and we hope to be able to do it again soon! ABOVE: Lewis with his cat Charlie! Charlie always refuses to budge when I put Lewis on the bed so he just makes himself comfortable however he can!

ABOVE: Samuel relaxing in Granny's posh garden chair! The day after our non-bbq, we went to Granny and Grandads house for a relax! Granny cooked a lovely lunch which we were able to eat outside (in the shade!) and Samuel and Lew had a lovely time just chilling! ABOVE: Lew was tired, but even so he was really happy to be seeing so much of Grandad. ABOVE: Lew and Samuel

ABOVE: Samantha and Samuel being a bit weird! ABOVE: Grandad and Lew chilling in the shade ABOVE: Granny gave Lew a tiny taste of ice cream, but he didnt like it much! ABOVE: We bought some ice cream and made Samuel a cream soda and ice cream float as he's not had one before! What a terrible mum I am! ABOVE: Samuel always takes great photos of Lew! Lew loves his brother soooo much!

ABOVE: Lew with his gift from Postpals Helen B, and a photo of her gorgeous rabbits Adelaide and Tiramisu! Thank you so much Helen for the cassettes and the cassette case! Very handy! And Lew loves to listen to music and stories! And we love the photo of the rabbits and hearing about their escapades at the vet! ABOVE: Lew with his card from Sarah. Thank you very very much Sarah Kidd for the fabulous frog and butterfly card! Lew loved looking at it and we all really enjoyed the poem! Here is a really cute photo of Lew and Ethan. Ethan is 10 weeks old now (he is Matthew's brother) and he's adorable! Lew loves him too! ABOVE: Samuel in the pool ... he is practising holding his breath! ABOVE: Thank you so very much to the Cobra Foundation for the donation of 'Cobra for a year' for us to auction at Lewis' fundraising night on Wednesday. The Cobra Foundation is an independent charitable trust, founded by Cobra Beer Ltd in 2005. The Foundation provides donations to charities and good causes which focus on improving the life and outlook for disadvantaged children in the UK and India.

FINALLY ... dont forget the Peter Kay Tribute Act Night on Wednesday 28th May at the Keepmoat Stadium here in Doncaster. Tickets are £25 each, but if you buy a table of 10, you only pay for 9 tickets. And what a good reason to come along - you can bid for Cobra for a year! Thats 365 bottles .. 16 cases .. might not last a year .. but what a way to go, eh?!

Happy Birthday Samuel!

2008-05-09T10:23:00.006+01:00

Yesterday (8th May) was Samuel's 15th Birthday. It was a school day, but after school we took him to pizza hut for some tea! Lewis hadnt been to school as he's not really well, he's not 'ill' as such, but he's just not himself. He's listless and sleeping alot, and having temperature fluctuations (going very hot and blotchy for no reason on and off) and so we felt it would be better to keep him home from school, but we didnt want him to miss Samuel's birthday tea! So even though he didnt feel too good, Lew did enjoy seeing Samuel having a fun time! We were lucky enough to be joined by some of our good friends. Debbie came with Matthew (above) and baby Ethan. Kirsty (above with Matthew) is our friend and is also Matthew's carer before and after school. Here is Lewis asleep on the garden swing yesterday afternoon. Here is Lewis playing with Matthew on the floor at Debbie's house. Matthew is very mobile and can roll his body from side to side. Lewis found this very amusing! Below is a lovely photograph taken last week of Samuel and Maisie. Maisie and Oliver had been round to play and I just caught this shot of them messing about outside the conservatory! I love this picture! So back to Samuel's birthday party (all the photos have got mixed up!). Here is Kirsty troffing some pizza ... I think she saved a tiny speck for her fiance Alastair who was at work!

Here is Lewis with Daddy and with his friend Luke. Here is Samuel having a cuddle with gorgeous baby Ethan (Matthew's new baby brother!). Ethan got lots of attention and got passed around the table quite alot!!! Matthew was very relaxed!! So much so that he had his feet up!! Here we are waiting for our food! We were all STARVING!!! Ethan was definitely the star of the afternoon! Here he is with his mum Debbie.

Lewis enjoyed watching Luke playing with Daddy! Ethan having a cuddle with Lewis' granny, Marion.

Below, Lewis' grandad fell asleep at the table and we tried to get a photograph, but then he woke up again!! We had a lovely day, Samuel really enjoyed his pizza and having good company. He got some lovely presents. Thank you very much to postpals Sian and Jamie for his card and the fab belt! And thank you to postpal Leona for the lovely birthday card. Thank you to postpals Caz and Declan for the card and the money!! And thank you very much Karen (Sami) for the card and present which arrived today - Samuel will get that when he gets home from school so we dont know what it is yet!!!

April!

2008-04-29T16:37:00.006+01:00

What a busy month April has been! Lewis started back at school on the school bus and 3 days a week instead of just 2! Very exciting! Although by Friday lunchtime he is absolutely shattered!! Here is Lewis relaxing in his sensory room after a busy day at school! Here you can see Charlie sat in the road waiting for the school bus to arrive! Charlie loves Lewis! Lewis got a huge amount of post from Postpals posties this month! Thank you so much everybody!

Lewis got a lovely card and 3 little puppets - a pig, a badger and a cow! We have lots of fun with these!!! Thank you so much to Abbie for your lovely cards! We loved the spider poem! Here is a picture that Lewis made at school! Aunty Nicola and Uncle Lee gave Lewis some money so with this we bought these fabulous birds - a duck and an owl - with real sounds when you squeeze them! Lewis took the duck to school and the other children in his class loved to listen to the quack quack quacking! Thank you for Samuel's cool gift! He is at the age now where he loves his smelly stuff!!

Thank you so much Jessica B for the lovely sparkly book, Animal Opposites, and for your lovely letter. I did try to reply by email but it bounced back! It was really interesting to hear about you as we get post from posties, but often we dont know much about them, so your little list of useful info was really great! Wow Helen F, we loved reading about your cats, and seeing their photos! We especially liked the pictures of the cats in the box and in the basket! All the other pictures were really interesting too! We will have to decide which side to stick on the wall and which side will be hidden behind! Thank you again to Karen Sami for the lovely card! We have lots of cards from you that are in Lewis' day room as we like to look at them so much! Granny and Grandad have gone on a long holiday (for 6 weeks!) and so they have been sending Lewis lots of postcards, from South Africa and Australia! Lewis got this lovely bright card from Leona - thank you so much Leona! We know you've been sad recently, so want to send you some special love and kisses! xxx

Here is a photograph of scrumptious Ethan Crossland! Ethan is the new baby brother of Matthew Crossland who is a friend of Lew's from school! Here is Lewis with his biggest fan Heidi in her lovely Peppa Pig t-shirt. Also Phoebe was showing off her new cool shades! And here is Heidi with her cool shades! Her and Lew look like an old married couple sat in front of the TV! So romantic! Here is Lew with some more postcards from Granny and Grandad! Thank you so much Nathan and Anna and Andy for this fabulous CD which has songs on it that have Lewis' name on!

********************************************************************

A HUGE LOAD OF LOVE AND KISSES TO DECLAN KELLY who is not well at the moment. Declan, we think about you EVERY DAY, and we miss you loads! We hope you are well enough very soon to come home from the hospice so Mummy can put you on the webcam for us to blow kisses at! (http://www.declan-kelly.com/)

Here is Declan having a kiss from his big bro Kyle!

Our visit to Twickenham

2008-04-18T13:24:00.020+01:00

After Easter we went to visit our family in Twickenham. (Declan may recognise this shirt!).

Millie dressed as a nurse!

Millie as Batman!!

Lew having a gaze at Aunty Tania!

Lew enjoying relaxing on the garden swing.

Millie followed Samuel everywhere!

Me and gorgeous Millie!

Samuel and Daisy together having a photo - can you tell they dont want a photo?! We have a photograph of them both in the same place when they were 2 and 1 year old! Awww

Lew enjoying chilling with Daisy!

Millie sorting Samuel out!

The TV is on ... !

A rare photo of Aunty Tania!

Cool dude shades!

Mummy and Lew having a cuddle!

Millie in the cool dude shades!

Winding down ready for the long drive home.

We had a lovely time and Samuel and Lew did not want to leave!

Postpals - Samantha and Louis H

2008-04-07T07:48:00.006+01:00

http://www.postpals.co.uk/pals/Samantha+H

Is there such a thing as a coincidence?

This week I got an email from Postpals. It said Samantha needed some extra TLC and so did her brother Lewis. It turned out her brother's name is spelled Louis. Even so .. a coincidence?

Well, it caught my eye.

Samantha is dying. In the past week she has gone from being a bright, happy, sparkly little girl just 5 years old, to a mere shadow.

I have been so moved by Samantha's story, and another coincidence? Samantha is exactly one year older than my gorgeous niece Millie whom we absolutely adore.

You may have had an email from me asking you to visit Samantha's Postpals page. And I will ask you again. Who knows how long Samantha and Louis have left together as brother and sister before Samantha's body will support her no longer?

So please please please visit Samantha's page. Send something - a postcard, a letter, a card, a gift - to Samantha and Louis. Show them you care. If you dont know what to say, say just that you are thinking of them. But at least let them know. A happy smiley face, a pretty pink princess, anything. Samantha is just 5 years old - her brother Louis is 6.

http://www.postpals.co.uk/pals/Samantha+H

Easter holidays - super busy!

2008-04-01T12:30:00.034+01:00

What a busy Easter we have had! First of all, here is ANOTHER photograph of Lewis with Charlie!! Charlie likes to share his bed with Lewis sometimes ...!! One afternoon, Oliver and Maisie came to play. Maisie did a show while Lewis and Oliver watched!

We spent an afternoon at Karen's and Joe's and Lew loved being cuddled by Bethany ...

And by William.

Here's another photo of Charlie sharing his bed with Lew!!!

Samuel came back from spending some time with his dad in Twickenham. He was very happy, having spent some time with his nan and his sister Mollie as well. Here are Samuel and Mollie on the trampoline, a quick visit as Mollie was on her way home to her mum.

A big thank you to Helen Brierley for Samuel's lovely Easter card and chocolate bunny!

With the weather being so good over the holidays, Lewis got to spend some time in the pool. He was also very very excited when our house guests arrived for the weekend - Angela and Hannah from Wales! Here is Lewis in the pool with Hannah. He is soooo in love!

Here are Lewis, Samuel and Hannah enjoying the warm pool (which of course was donated very kindly by the Make A Wish Foundation and Heaven at Home!).

All warm after a lovely afternoon in the pool! Lewis is wearing his towelling jacket which Aunty Wendy, Uncle Andrew, George and Anna gave him as gift, all the way from Australia! Wonder woman Kath did some cutting and stitching so that now instead of going over Lew's head (it wouldnt fit!) it now opens at the front and wraps around. Lovely!

We had a very generous donation of two Chillows for Lewis and Samuel from Soothsoft Limited. A Chillow is a flat rectangle pillow sized cooling system! You place it under your pillow, or on your body where it is hot, and it cools you down! They are great, especially for Lewis who can get very very sweaty! You can find out more about Chillows at http://www.chillow.co.uk/. Thank you AGAIN to Helen Brierley (http://www.postpals.co.uk/) for Lewis' lovely Easter card and fantastic Easter masks! Here is Angela as a spring lamb, and Lewis as an Easter chick!

Another gorgeous day, so another afternoon in the pool! Lewis enjoying a cuddle with Angela who felt the cold even though everybody else was warming up in the sunshine!

Lewis and Hannah spent an afternoon with Kath, and Lew had some therapy on the trampoline!!

He loved being bounced, and he did lots of practising with his head holding, well done Lewis!

Time to relax a bit!

And do some colouring with Hannah.

After a hard afternoon working, time to relax!

A surprise visitor! Lewis' friend Luke came to deliver a lovely postcard from his holidays in Egypt!

Our Bridlington Holiday

2008-03-22T10:27:00.020Z

Despite the weather, we had a wonderful time on our recent mini holiday to Bridlington! Me and Lewis and Kath set off to a beautiful cottage (barn conversion) in Sewerby, near Bridlington, on the East Yorkshire coast. Our cottage was wonderful, fully equipped with everything we could possibly need, very pretty and tasteful, and very warm, considering it was really really cold outside! On Monday we went into Bridlington town centre for a wander around, and to walk along the seafront. It was soooo cold and really windy and the sea was very choppy! On Tuesday we had our first visit to Sewerby Hall which is a beautiful stately home with the most amazing gardens and even a childrens zoo! We had a great day and it was only £4 to get in, and free for Lewis (children under 5 free!). Lewis enjoyed coming up close with the peacock in the 'walk through' aviary!

At 3pm its feeding time for the penguins! We braved the rain for that!

The penguins knew it was just minutes to 3pm and were waiting at the gate to be fed!

On Wednesday we went for a scenic drive as the weather was too poor to risk walking far. And on Thursday we took a trip to Bridlington Old Town where we had lunch in a lovely bistro calle Ellie May's (I think thats what it was called!).

On Friday, James came across and we took him back to Sewerby Hall as it was such a great day out!

James enjoying the facilities at the Childrens Zoo ...!

In the Childrens Zoo we found a pigeon 'loft' and we had great fun buying bags of pigeon corn for 20p to feed them!

Inside Sewerby Hall there are lots of really interesting displays ...

And some of the rooms are set aside for local artists to display their work.

These striking pieces are made up of rubbish that has been collected from the beach at Bridlington. We wondered where the artist stored all his different coloured pieces of rubbish before he put them all together to create his works of art!

James ordering fish and chips from the display lady ...

Kath and Lewis enjoying the displays while Daddy chatted up the fish and chip lady!

This sign made Kath and I laugh as our trip to Bridlington was definitely breeze and bracing!

SPORT RELIEF

2008-03-13T18:46:00.003Z

Hello, you may or may not know that Lewis has been quite ill this week with a chest infection which we were worried would turn into pneumonia again. Well we think we caught it in time with antibiotics, fingers crossed, but it does mean that Lewis has been stuck indoors all week, has been feeling very poorly, and has been sleeping alot, as well as being pumped full of medicine and all the joys which antibiotics bring to his delicate tummy. Due to his ongoing recovery programme (ie. resting and avoiding being outside) we are not going to be doing the Sports Relief mile on 16th March at the Stadium. HOWEVER we will do the mile when Lewis is better, he will wear his 'number' and his sports relief socks (!) and all the money that has been raised will go to Sports Relief (those of you who have sponsored Lewis online will know that your money has already gone direct to Sport Relief via the website). As Lewis has had a week stuck indoors being ill, we have booked a week away to give him a change of scenery and to give us a little holiday. We hope that towards the end of our week away, Lewis will be able to venture outside and enjoy some of the countryside where we will be. So a huge thank you to everybody who has sponsored Lewis for Sport Relief, and please be assured that your money has gone to a very worthy cause. (NB. I have confirmed with Sport Relief that it is okay to do the mile at a later date).

More Birthday photos! and a surprise visitor!

2008-03-07T09:32:00.021Z

I've done the pictures back to front again! Sorry! So going backwards in time! Yesterday Lewis' ballpool arrived which we ordered about 6 weeks ago. It was great fun trying it out with our surprise visitor Jenna from Wales! Jenna is one of the daughters of our friend Angela from Wales and Jenna had said she was bored at home so I said 'come and visit' so she did! And we had a lovely time! Lewis loves Jenna and her sisters. Last August we spent a week with them in the Rhondda Valley and Lewis loved all the attention he got from all the beautiful Welsh women!

On Wednesday we went to Cannon Hall Farm (near Barnsley) with Jenna and Kath. It was very cheap to get in (an absolute bargain!) and we had a really good time! We bought some bags of food and so were able to feed the goats and sheep and even llamas and donkeys!!

We loved the donkeys. They were so friendly and very gentle.

With it being that time of year, there were lots of new babies! Lots of lambs and lots of tiny piglets!

Jenna finally felt brave enough to feed the goats, but she kept her gloves on!!

On Tuesday Lewis had been doing some sticking and colouring with Kath and so when Samuel came home from school, he showed us his artistic talents by helping out!

BY THE WAY ... Samuel got his Spring term effort results through at the weekend and he did REALLY WELL!! So a huge well done to Samuel for his hard work at school.

Here is a photo of Lewis with his Birthday card and gift from Kirsty A of Postpals. You can read more about Kirsty and other postpals at www.postpals.co.uk. Lewis got so many cards and gifts from postpal posties this year for his Birthday, but there are alot of postpals and they all need to be remembered so please if you havent already, take a look at the Postpals website, find a pal, and get sending!

On Tuesday it was so bright and sunny outside that Lew was able to go in his pool again, this time with the expert Kath! He had a great time and did some really good exercises and I think Kath was surprised at how warm it is in the pool even when its only 5 degrees outside! Here you can see how long (tall) Lewis is getting these days!

At the weekend we went to another 4th Birthday Party! Lewis' friend Joel was 4 on 27th February and he had his party on the Saturday. We had a lovely time at Joel's sporty party, Lewis was able to join in playing party games and he loved to meet Joel's other friends!

We had a relax and a cup of tea at Yolanda's house before we came home after a very busy day!

A lovely photo of the two BIRTHDAY BOYS who are now 4!

HAPPY BIRTHDAY LEWIS! 4 TODAY!!!

2008-02-28T09:09:00.050Z

Ei'n filwr fach - Our Little Soldier

2008-02-26T16:32:00.004Z

My wonderful friend wrote this verse for Lewis' birthday. Its so moving, I wanted to share it with you all.
Ei'n filwr fach - Our little soldier
He was a child with up and go
Looking forward to developing as he loved to show
He filled up the trolley in Tesco's one day
With goodies for him along the way
He'd play footy with Daddy and Samuel too
Nothing could stop him as he was nearly two
Then all of a sudden, they suddenly knew
Without explanation, his walking withdrew
This continued at a very fast speed
Until his body shut down even down to his feed
He's baffled the doctors and specialists too
But this hasn't stopped Lewis
Saying "how do you do"
It may only be said with his eyes these days
But our Welsh Valley accent
Gets chuckles and smiles in many ways
And now that he's four
We'd like to share these words with you
Have a fantastic Penblwydd Hapus
And of course Happy Birthday too
Thank you Angela. We love you so much and cant wait to see you next month xx

What a STAR!

2008-02-21T18:47:00.018Z

Last week at school Lewis was Star of the Week for his good work in the communications room.

Also last week Lewis' cousins Katy and Emily were visiting from Leamington Spa so we went to see them at Granny and Grandads house. Lewis had a lovely time being entertained by Katy. Emilywas busy playing upstairs so we missed seeing her although I am sure we will see her again soon. Also visiting were Pat's granddaughters Libby and Joanna who also played with Lew for a bit.

On Valentine's Day we went to visit Rachel, Heidi and Phoebe and we met Sooty the rabbit! Heidi made Lewis a beautiful valentine's card!

Here is Rachel with Sooty the rabbit. Rachel is not growling at Lew! She was telling a very interesting story! Lewis got a Valentine Card not only from Heidi but also from his Postpals and one was even a secret one! We particularly loved the purple and white heart which was made for Lewis by his Postpal Erin.

Back at home, Charlie wanted to have a cuddle with Lew!

Finally, the weather was nice enough for us to go in our pool in the garden! Although it was only 2 degrees centigrade outside, the water in the pool was super warm (37-38 degrees) and the sun was shining and so we had a wonderful time doing some hydro exercises and enjoying being outside in the sun!

Here is Lewis with his Moomin which he got from Niki, Kevin and Noah. We love the purple/blue colour best but it only lasts for a second before it changes!

At the weekend we had a visit from Granny and Grandad, Pat and her son Ian. We had a lovelyl walk around the lake and a huge lunch cooked by James!

Today Kath did some super physio exercises with Lew and even got him standing up!!! Rachel and Heidi had also come to visit so we enjoyed playing together while Lew was also doing his exercises!

What a lovely week we have had, although very very busy!

Today Lewis was in the Doncaster Freepress which you can also see online at http://www.doncasterfreepress.co.uk/free/Other-kids-benefit-from-Lewis.3788926.jp.

And this time next week (Thursday) Lewis will be FOUR YEARS OLD!!!!

We've been so busy!

2008-02-11T18:21:00.002Z

NB. On Monday, please check out www.mumsclick.com for Lewis' story. A big thank you to Mumsclick, a fabulous website for mums, for offering to feature Lewis' story in this way! Thank you to Lewis' super postpal Helen for the funny puppet! It made us all laugh!

NB Kirsty A (www.postpals.co.uk/pals/kirsty+A) is fundraising for the Wish Upon a Star charity to send 100 poorly children to Lapland to visit Father Christmas. Please if you get chance, check out Kirsty's website (http://www.kirstysstory.co.uk/). Thank you so much for your letter Kirsty! Is it this Thursday you are on Channel 5 at 11.45am? If so, lets hope lots of people watch it and read about your huge fundraising efforts! Thank you to all Lewis' postpals who have sent him post this last couple of weeks. Lewis got a lovely card from Alice P and Milly P. Milly P is on postpals (www.postpals.co.uk/pals/milly+p) so please take a look at her page. Just this month Alice's and Milly's parents have received some difficult news - Alice P is now ill with Hodgkins Disease (www.postpals.co.uk/pals/alice+p). We hope you can find time to send both Alice and Milly a card at this difficult time.

A special thank you to Lewis' pal Noah and his mum Niki! They got Lewis a colour phasing Moomin and a lovely sunshine card!

Here is a picture of Noah on his mobile in Paris!! ...

We had a lovely postcard from the New Forest from Lewis's postpal Karen Sami ... And a beautiful handmade card with an aeroplane on from Niki W ...

And THREE cards from photobox greetings (two were the same from Jenn! and one from Postpals team).

Thank you very much Julie Barrett for the lovely Mr Happy card and Mr Happy book! Thank you also for the emails we have received from Postpals! We do try to reply to all emails and to mention cards and gifts on Lew's website and to say thank you personally if we can (if you give an email address or contact address, we will send a reply). All Lewis' cards and pictures go on his wall which is getting very full!!!

This weekend we went to Twickenham to visit our family. We had a lovely time, the weather was beautiful - like summer! Here is Lewis' cousin Millie with mad Aunty Samantha (me!). Millie is just three weeks younger than Lewis!

Here is Lewis enjoying a cuddle with Aunty Tania (Millie's mum).

Here is Lewis with Aunty Tania and with Millie. We were at a play area by the River Thames at Twickenham.

On Saturday afternoon we went to Evie's birthday party! Evie is Lewis cousin and she was 3 on Saturday. HAPPY BIRTHDAY Evie! We had a wonderful time! Here is a photograph of all the grandchildren - Lewis, Samuel, Millie, Daisy and Evie.

Evie had fun opening her Birthday presents and Millie and Lewis helped.

There were lots and lots of balloons at the party!

Another photo of all the grandchildren together. Evie was practising making monster faces!

In this photo, Millie is making faces too!

On Sunday afternoon we went to the park.

Thank you very much indeed Aunty Tania, Uncle Nathan, Daisy and Millie for the lovely presents! Lewis loved the books and the teletubbie bath toy.

On Monday, on our way home, we popped into Luton to visit Declan (http://www.declan-kelly.com/ and www.postpals.co.uk/Pals/Declan+K). Declan's mum Caroline has become a very good friend and it was wonderful to finally meet her and Dec and Kyle (Dec's brother) in person. Lewis borrowed Dec's comfy chair for our visit!

Lew loved having cuddles with Caroline, especially as she is blonde!!!

I had a cuddle with gorgeous Dec. He is 5 years old and very very tall!

Declan and co had bought Lew a lovely present of a glowing bear which lights up when you press a magic wand! We were hoping that Nathan would also come along with his mum Anna, but unfortunately Anna wasnt well so we will have to try and meet up all together another time! Anna and Andy (Nathan's mum and dad) had some amazing and miraculous news late last week. In a recent scan, the doctors noticed that some damage that Nathan had to his brain had healed part of itself. This is a true miracle and it means that Anna and Andy have had to start thinking differently about their little boy and what his future holds. Let us hope that this year will bring miracles to us all. You can read more about Nathan on his website www.caringbridge.org/visit/nathanbovell

A HUGE thank you to SOLACE (Society of Local Authority Chief Executives and Senior Managers) who raised a massive £5230 for The Lewis Jeynes Fund! The money was raised at the SOLACE Annual Dinner in London, so a big thank you to Byron Davies for agreeing to have Lewis' Fund as the good cause at the event.

Meeting Matthew!

2008-02-03T17:28:00.000Z

In January we had a lovely afternoon at Granny and Grandad's with their friend Pat. We had a lovely lunch and lots of lovely chatting and playing a trivia game! On the same day, Lewis' friend Matthew came to visit us (at Granny's house) with his mum Debbie and his dad Robert. The reason for their visit, apart from just to say hello, was to pick up some sensory equipment that we were able to buy for Matthew from The Lewis Jeynes Fund. The Fund was able to buy Matthew a specialist projector, rotator and effect wheel which he will be able to enjoy when his new room is ready at home! Some photos of Lewis, Samuel and James. Granny and Grandad and Pat were busy in the kitchen!

Matthew and his dad Robert, below.

Matthew's mum Debbie!

Matthew with his new sensory equipment from The Lewis Jeynes Fund.

School and stuff!

2008-01-24T17:45:00.000Z

PLEASE LOOK OUT FOR CHAT MAGAZINE! Lewis' friend from school - Jack Hardisty - is in CHAT magazine this week so please do try and get a copy and read about super brave Jack and his very brave family! It's a sad story but with a very happy ending!

Lew absolutely loves school! He looks so cute in his school uniform, but I keep forgetting to take a photograph - probably because we are in such a rush on school mornings to get him ready!

Lewis had a special treat last week when he went to visit his friend Tobey in Austerfield. We have purchased a bean bag 'seat' which we can take with us when we visit friends and it means Lew can be more involved when his friends are playing, rather than sitting high up in his wheelchair, or being propped up on cushions on sofas. On Thursday we went to Sprotborough to visit Rachel, Heidi and Phoebe, and of course gorgeous George! We had a lovely afternoon, Lew really enjoyed spending time with Heidi and being 'kissed' by George who has grown SO much since we last met him! Unfortunately, we forgot Lew's new beanbag, so he ended up propped up on the sofa with cushions again!!

The Deep!

2008-01-16T17:18:00.000Z

What a fab day we have had today! We went to The Deep at Hull (http://www.thedeep.co.uk/) with Lizzie and Mavrick and we had the best day for a long time!

Lewis first day at school!!!

2008-01-07T17:00:00.000Z

Well, Lewis went to school today for the first time and he LOVED it!!!

He went from 10am to 2pm and I think he would have liked to stay longer!

The topic at school today was the weather and Lew had his feet in water (like rain) and he painted a puddle picture with his feet and some blue paint!

Lewis' favourite cat, Charlie, has been spending alot of time with him lately!

Earlier this week Lew had a very bubbly bath with Marie.

Yesterday was Lewis' friend Jay's birthday party and he was 5. HAPPY BIRTHDAY JAY! Lew had a great time at the party, he really enjoyed the entertainer as he had a puppet called ... LEWIS!!! (www.andygreaves.co.uk/shows.htm).

This afternoon, after school, we went to visit with Denise, Maisie and Oliver, and Lewis loved seeing the Tigger Show! We didnt have the camera to take photos, but Maisie and Oliver dressed in Tigger outfits and did a very bouncy show for us! Thanks Maisie and Oliver, it was great!!!

Welcome to 2008!

2008-01-05T11:10:00.001Z

So here we are, another year over and very high hopes that 2008 will be better for all of us.

And for Lewis, Monday is very exciting as he starts school!!! To begin with, he will go just 2 days a week, gradually increasing to a full week when he is 5.

Not new photos to share as we havent been up to much between christmas and new year, but we have got some lovely older photos which we'd like to share.

Lewis and James, 12th August 2006.

Lewis loving playing in the garden in the summer, 9th June 2007, just a month before his gastrostomy operation.

Lewis enjoying playing BOO in the bathroom mirror, 10th June 2007.

The day before Lew's gastrostomy op, 15th July 2007.

After Lew's gastrostomy, we could see his gorgeous face properly again!

Photos from Christmas, as promised

2007-12-28T13:46:00.000Z

Here is Lewis' friend Luke practising his reading!

Debbie and Matthew treated us to bowling and we also got to meet Father Christmas and he was LOVELY!

Lewis loves playing with his musical instruments, especially when he's not feeling too good and we cant go outdoors.

We went to visit Karen and Joe, William and Bethany, Elisha and Emily, and Lew was so happy to see them! He especially loves the girls!

Lewis loved having a cuddle with Elisha.

Lewis and scrumptious William.

Lew with mummy, visiting with Karen and Joe and the children. We had a great time, Lew enjoyed having cuddles with the children and being entertained by their dancing and singing and playing!

At the Bluebell Wood Christmas Party in Sheffield. Matthew and his dad Robert had their photo taken with some Star Wars characters!

Us at the Bluebell Wood Christmas Party.

Lew got to meet Father Christmas AGAIN! He was so lovely and Lew really enjoyed meeting him.

At the end of the party, it SNOWED! (Indoors!).

As Christmas approached, Lew's health got worse and he wasnt feeling very well at all. So it was a lovely surprise to receive a gift from one of his Postpal friends.

He also got a lovely card!

These beautiful window decorations from Lewis' cousin Evie really do brighten up his bedroom!

Stuck indoors again as Lew wasnt well, so we got the musical instruments out again and played Christmas songs! Lew loved watching Miss Jodie!

We really really needed some fresh air, so we braved the cold for a walk around the lake to feed the birds. Lewis was really excited that his friend Luke could come with us!

Back home in the warm, having a go on the Nintendo Wii!

We were very lucky indeed on Christmas Eve to be able to travel to Leicester for lunch with Nathan's mum Anna, dad Andrew, and his grandparents Myrtle and Michael. (www.caringbridge.org/visit/nathanbovell).

Lew was too poorly to go in the pool, but Nathan loved it and I had a go too! Very nice way to spend Christmas Eve, especially after a delicious lunch!

Christmas Day finally arrived and Samuel and Lew were thrilled to receive so many parcels from Postpal friends. Thank you so much Postpals!

Thank you Aunty Lucy, Uncle Mike, and cousins Katy and Emily for the fabulous books and the DVDs!

Thank you Caroline, Mr Caroline, Kyle and especially Declan for the super cool cheeky monkey top and jeans! (www.declan-kelly.com).

Thank you so much Maisie and Oliver for the super dancing snake!

Lewis and Samuel (and me and James) got a huge box of pressies from our special Postpal Sian and her little brother Jamie!

Later, Granny and Grandad did some dancing for Lewis! Also in the picture is Lew's Pingu which he loves! Thank you so much Evie (and Aunty Nicola and Uncle Lee).

Granny reading Lewis a story.

Later, after lunch, we played a game! Granny and Grandad Colin and Grandad Skinny made us laugh!

On Boxing Day Lew was very poorly so spent most of the day in bed sleeping. Later in the evening he came downstairs for a cuddle with his Granny and Grandads.

Lew hasnt been well over Christmas, but we have managed to stay away from hospital! Today (28th) Lewis is feeling much better, so fingers crossed his illness has passed and he can keep improving in time for 2008!

We hope you have enjoyed our selection of photographs from the Christmas period. Thank you to our family and friends and of course postpals (http://www.postpals.co.uk/) posties for all the wonderful gifts and cards Lewis and Samuel received.

MERRY CHRISTMAS!!!!

2007-12-25T13:36:00.000Z

A very Happy and Merry Christmas from the Jeynes Family to all of our family and friends! We have taken lots and lots of christmas photographs and will share them with you later in the week. Love and kisses to everybody, especially to Declan Kelly who we hope is having THE BEST CHRISTMAS DAY EVER! We love you soooooooooo much Dec xxxx (www.declan-kelly.com)

'Tis the season to be jolly!

2007-12-11T10:14:00.001Z

PLEASE TAKE A LOOK AT OUR GUEST BOOK! LEWIS AND MATTHEW GOT A MESSAGE FROM FATHER CHRISTMAS!!!! Lots and lots of Christmas stuff going on at this time of year! Its great! We are soooo busy!

But please do remember the children who will be in hospital or very poorly at home or in hospices at this time of year.

Lewis' buddy Nathan has a chest infection and is feeling a bit rough (http://www.caringbridge.org/visit/nathanbovell).

Lewis' other buddy Declan is still in the hospice, but his mum and dad and big brother are hoping they can have Declan home in time for Father Christmas on Christmas Eve (http://www.declan-kelly.com/).

There are so many children you can help and support this Christmas at http://www.postpals.co.uk/.

And of course not forgetting Lewis who yesterday afternoon was rushed to hospital in an ambulance as he had a massive tonic clonic seizure (3rd in his entire life) which frightened both James and I immensely. We got him home again late yesterday evening, but the medication he had been given made him very zombie-like which was scary in its own way. He's back to himself this morning, so fingers crossed no more horrid seizures this year please!

Thank you to all the postpals Lewis and Samuel have received cards and gifts and letters from so far this month. Thank you to Despina for your card, thank you to Kate Dee for your card, thank you Laura H for the card, than you to Sian and Jamie for the huge Christmas parcel and letters and card, thank you to Julie and Alan Barratt for the cards and the Christmas parcel. Thank you very much to Postpals for Lewis' Christmas gift (the singing and flashing Christmas tree!). All the wrapped gifts have gone under our Christmas tree until the big day! We are not sending Christmas cards this year, so please dont feel offended that you havent received one from us if we normally send one.

Lewis has been able to go back to nursery this month which he has really enjoyed! He also went to a Christmas party with Homestart (http://www.home-start.org.uk/) and met Father Christmas a little bit early! Lew had his face painted too! He enjoyed meeting his friends Daniel and Heather too who were dressed in their Christmas outfits!

We went to visit Lew's school which he will start in January. We are very very excited about this, although of course very nervous too!

We had a great day on Saturday, we went to Fundays for a party, and then Tobey and Callum came back to our house and we played on our Wii!

As always, we hope you enjoy the photographs!

Just some photos

2007-12-03T17:02:00.000Z

It's December, our Christmas tree is up, and we're getting very excited!

Please do consider not sending christmas cards this year, but using the money instead to donate to charity - there are so many worthwhile charities in the world and your donations will last a lot longer than christmas cards do!

We had a visit yesterday from an old friend - Jodie (Miss Jodie from when Lewis' was at nursery) - and Lewis was so happy to see her! Jodie noticed how much Lewis had grown as well! We hope to see alot more of Jodie in the next few weeks before she goes back to college in January.

*************************************************

PLEASE PLEASE PLEASE

leave your comments on Declan Kelly's website

www.declan-kelly.com

Declan isnt a well boy at the moment, he is being cared for in the hospice, and I know his family would be very grateful to receive your kind comments. You can also send cards and gifts to Declan and his family via Postpals - www.postpals.co.uk/Pals/Declan+K

Tobey's Birthday

2007-11-26T15:56:00.000Z

Just over a year ago, Lewis made a new friend called Tobey.

Monday was Tobey's 4th birthday - HAPPY BIRTHDAY TOBEY! - and on Sunday we went to a special Butterfly Farm to help Tobey celebrate his special day!

Lewis had a great time! He loves spending time with Tobey, he always makes him laugh!

We hope you enjoy the photographs!

Please do visit Declan Kelly's website. Declan is very poorly at the moment and he and his family would really appreciate your kind comments in their guestbook. www.declan-kelly.com

NEXT!

2007-11-24T22:08:00.001Z

Hello again! Well what a very special day we had on Wednesday this week!

After the BEST Wellchild Awards, the fashion clothing store NEXT very generously offered each of the winners £150 to spend in NEXT!So we arranged to meet Natalie Robinson (16 years+ bravery award winner who lives in Sheffield) at NEXT in Meadowhall for our shopping sprees!

On arrival we were greeted by Sam Midgely who introduced us to our personal shoppers who would help us to spend our £150!

Natalie headed off to the women's section with her mum Loren, and me and Lew headed over to the childrens section!

It was great to see all the lovely clothes and to be able to choose cool outfits for Lew without thinking about the price tags! We got Lew a great selection of outfits, jeans, tops, pyjamas, some gloves and even a coat!

So thank you SO MUCH to NEXT for your very very generous gift. Lew has already been wearing his new items of clothing and we especially love the tiger pyjamas!

It was so lovely as well to catch up with Natalie and Loren and as before, Lew was totally smitten by Natalie and spent most of the afternoon gazing at her!

It was only our second time of meeting Natalie, but already she has a huge place in our hearts and we love her!

For Lew, Thursday was very cool as well! Samuel had gone to school as normal, but mid morning we had a phone call to say he had been injured playing hockey and he had to come home (his thumb had been hit hard with a hockey stick and was bleeding and swollen and so Samuel needed some treatment as he has haemophilia). Lewis loved having his big brother around and it really made the day very special for him!

Lewis wearing Samuel's school tie! Our friend Catriona, earlier this year, bought Lewis an iTeddy and I just wanted to say thank you again to Catriona, Neil, Tilly and Eliza for this super gift! It gets so much use! And here is a photo of Lew enjoying listening to his music on it just this week!

Thank you to everybody who has sent Lew pictures and cards this month! Here is a photo of Lew in front of his post wall! And DONT FORGET!

You can catch Lew (and other Wellchild Award winners) in BEST magazine on sale this Tuesday!

And in December, you can watch the Awards Ceremony on Sky channel 539, Virgin TV channel 233 or Freeview channel 87 at the following times:

Friday 7th December at 9.30pm Saturday 8th December at 8.30am, 2.30pm and 8.30pm Sunday 9th December at 2.30am, 11.30am and 5.30pm Monday 10th December at 00.30am and 5.30am

DONT MISS IT!

Fashion Show, 9th November

2007-11-22T21:01:00.000Z

Thank you SO MUCH Alison and George!

Many months ago, Alison (mum of Samuel - another Samuel, not mine!) approached us and asked if she could do some fundraising for Lewis. We of course accepted! And several months and LOTS AND LOTS OF HARD WORK later, Alison pulled it off! It was a fantastic night, well done Alison! And thank you so much also to George who stepped in towards the end with his expertise to give Alison a hand!

Thank you also to Cinderella's Bridal House (Silver Street, Doncaster, http://www.cinderellasbridalhouse.co.uk/ / 01302 365 013) and SEEN fashion wear (http://www.seenltd.com/Scot Lane, Doncaster) and Homeboy childrens fashionwear (Doncaster).

Special thanks to Jane for her beautiful singing (which I sadly missed) and for the gorgeous talented Ellie Hughes (only 11 years old and with a fabulous voice that amazed everybody!)!

Thank you to the Angela Gravel School of Dance for the beautiful dance performances! We especially loved Ghostbusters!

Thank you to Matty DJ for his talents on the microphone! And for playing Save All Your Kisses For Me TWICE as its Lew's favourite song!

Thank you also to Alys Camp for their great performance!

Thank you to Aladdin's Cave (Scot Lane, Doncaster) for the DELICIOUS chocolate fountain and the pop fountain for the children! And not forgetting the HUGE amount of beautiful balloons that made the room so very very special!

Special thank you to Cinderella's for providing us with a chauffered limousine to and from the event! How lovely was that?!! Lewis loved the special sparkly twinkly lights in the limo! You can get details of the limousine for hire by contacting Cinderella's.

Of course, thank you to the Holiday Inn, Warmsworth for providing the venue for the show!

An extra extra special thank you to Alison's Dad for his fabulous skills with a microphone too! And because he looked so handsome in his DJ and bowtie!

Thank you so much to everybody who donated prizes for the raffle and the auction. Thank you to everybody who put in their time and effort to make the night a great success. Thank you to everyone who modelled, especially the gorgeous local children who made the night extra special! And thank you to everybody who came along, bought raffle tickets, bid for auction items and basically made the night the success it was!

THANK YOU ALL!

We hope you enjoy the photographs. Please please if you have any photos of your own from the night that you can share with us, do let me know!

We managed to raise around £3,000 for The Lewis Jeynes Fund. As well as helping Lewis, some of this will go to The Bluebell Wood Childrens Hospice, some of this will go to Postpals (www.postpals.co.uk) Christmas Elves Appeal and some of this will go towards helping other children in Doncaster who have undiagnosed, life limiting conditions like Lewis.

Fingers crossed

2007-11-20T10:42:00.000Z

Fingers crossed Lew is much better today. He had a really good night and with his milk water down to 50/50 and on a very slow drip overnight, he has managed to keep most of it down, PHEW!

So today he's actually dressed and in his chair, rather than in his bed!

Yesterday was a horrid horrid day, when you cant see any future and any light and so horrid depressing negative thoughts crowd in to fill the space.

I will do the fashion show pics etc, later this week (still catching up on everything from being in hospital) but for now here are a couple of very cute pics of Lew with his cousin Evie who came to stay with us at the beginning of the month.

Also a quick but very big thank you to Lew's cousin Millie from London who sent him some colourful pictures for his wall.

Lewis still not well

2007-11-19T13:24:00.000Z

Just a quick update to say the photos I have promised wont be on for a bit longer as Lewis is still not well. We are caring for him at home (at the moment cant face hospital and so the local hospice community team are helping out with Lew's care at home) and hope he will be better very soon.

Back home again

2007-11-16T18:05:00.000Z

As you may already know, Lewis was admitted to hospital last Sunday with pneumonia. Well we are back home now, very tired, but much better and looking forward to spending some time at home! Lew still isnt 100% so we have to take it easy with him for the next few days, but at least we can all sleep in our own beds again! I will update during the week with fashion show photos and other stuff about our week in hospital. But just a quick and VERY BIG thank you to all the staff on Ward 31. Cant remember all the names but will try to remember some: Anne, Alex, Jayne, Chris, Jodie, Gina, Fran, Helen, Dawn, Lydia, Debbie, Vicky, and all the visitors we had from Ward 30 and the CAU (Andrea, Janette, Sara, etc).

Lewis not well

2007-11-10T22:54:00.000Z

Hello, just a quick hello to say Lewis isnt well. After 3 visits in one week to the assessment unit at the hospital as I knew there was something not right with Lew, we saw his paediatrician for his regular check up and were told Lew has a bad chest, and he now has two inhalers. Ventolin to help open his airways to help him to breath better and a steroid inhaler, not sure what this does but he's got to have it for at least 3 months. Since starting the inhalers, Lew's chest has got worse. Now perhaps without the inhalers his chest would have been MUCH worse, I dont know. But if he continues to cough, choke and wheeze the way he has done today, we will be back at the assessment unit tomorrow!!! Despite Lew being ill, he has been very happy to see his Aunty Nicola, Uncle Lee and especially his cousin Evie whom he adores! We also had a very special night last night (Friday) at the fashion show which was arranged almost single-handedly by our now very good friend Alison Firbank, and towards the end by her 'accomplice' George! I will add photos and more details about the night when Lewis is feeling better and I can concentrate more. Please do leave your comments. The comments space is looking very empty!